MY STORY: One test could have saved us heartache” - Daily Nation

One test could have saved us heartache”

Saturday March 11 2017

James Kabindu and his wife Alice who have raised two children who suffered the effects of a genetic defect. PHOTO | FLORENCE BETT

James Kabindu and his wife Alice who have raised two children who suffered the effects of a genetic defect. PHOTO | FLORENCE BETT 

By FLORENCE BETT
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For 11 years, James Kabindu and his wife Alice Ng’endu didn’t know what condition their two special-needs children had. “George and Angel were born normal,” says James, 42, from their home in Utawala. George is 13, Angel is eight. “They both started showing symptoms when they were around eight months old, symptoms for normal ailments,” James explains. “They would get a rash or fever, discolouration of the skin, sometimes a cough. We would take them to hospital, the doctors would give them antibiotics and send us home. The kids would get better.”

When the couple had George, they had no idea what they were dealing with.

“George was a happy and playful boy,” James remembers, “but (by the time he was a year old) we noticed that he didn’t want to play anymore. He wanted to sleep all day. He couldn’t maintain eye contact, couldn’t walk without support or hold things in his hand. He also didn’t want to eat.”

Then he started convulsing. “We had him assessed and the tests said he had autism with elements of epilepsy and cerebral palsy.”

James enrolled George in a private boarding school for children with special needs when he was a year and a half old. “He really deteriorated,” James says in a low voice. “ He could no longer sit upright or walk. His spine curved. We later learned that the kids were put on their backs all day. The school wasn’t taking care of them! George would cry a lot when we’d drop him at school, but the teachers would tell us he’d calm down after we left.”

Later, James transferred him to a public school that had an autistic unit. George, however, needed special attention because the convulsing had worsened. They decided to keep him home. At the time, James and Alice were employed – James was managing information systems for an imports company, Alice was running a business. “The house helps we got didn’t stay for more than a week. My wife eventually stopped working to give George fulltime care.”

TROUBLED TIMES

In 2008, the couple had Angel. “She started showing the same symptoms at nine months that George had showed. It was hard for us to accept that we had another child with special needs.” Doctors who assessed Angel drew the same conclusion. She had  autism. George’s and Angel’s convulsions became more frequent as they grew older. “Each time they convulsed, a part of their brain got damaged, so they became more intellectually disabled and more dependent.”

As if that wasn’t enough, life dealt the Kabindus another blow.

“I lost my job in 2010,” James continues. “Then I got an infection in the ankle of my left leg which made it difficult to walk. I’d noticed the inflammation the year before but I’d ignored it.” James adds, “I couldn’t get the surgery the doctors advised because we didn’t have the money. I was in crutches for two years. I welcomed our third child, Joan, home in those crutches.” It was a miracle that the infection went away without any medical intervention, James simply willed himself to walk and get better and started a business.

Joan did not exhibit any of the symptoms her siblings had. The couple had another baby – a son, Clement, in 2014. He too didn’t exhibit the symptoms. Joan and Clement are normal children. Meanwhile, James and his wife desperately wanted answers for George and Angel’s condition. They held a fundraiser in 2015 to finance a medical trip to India. Friends, family and well-wishers gave them Sh1.6 million.

“In India, the doctors met us at the airport and took us straight to the hospital to rest then started testing.”

On the fifth day of tests, the doctors zeroed in on what the condition was. “They told us that our children had PKU [Phenylketonuria],” says James.

“PKU is a genetic and metabolic condition caused by the body’s inability to break down one of the amino acids found in proteins. This amino acid is called PHE [phenylalanine]. PHE builds up over time until it reaches toxic levels. It leads to brain damage.”

RENEWED HOPE

James and his family returned home with a renewed sense of hope – they knew what they were dealing with. It had a name. It had a management plan. George and Angel are now on a low-protein diet.

“We supplement this with medical food we import from the US. One tin costs $35 (Sh3,500). The two consume two tins a month. We get the drugs  from India because they are cheaper there. Lepsil, for example, costs Sh845 in India, but here it costs Sh2,640.”

 James dug deeper into his research, he learned a crucial fact: “There is a screening test conducted at birth that can detect PKU, which means that the effects of the condition can be managed, and the kids go on to live normal healthy lives. Countries in the West carry out this test. We don’t do it in Kenya.”

James has filed a petition with the Government to include the screening test for PKU – and 30 other conditions – at birth.

“I wouldn’t want another family to go through a disability that can be prevented.”

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